June 10th 2003, Joe started his Chemotherapy he was hooked up for 6 hours. The nurses said he would need a nose tube so he could take all his medicines as there were so many, he screamed when they were doing it I couldn’t watch, he was so upset and didn’t understand what was happening. We eventually calmed him down and he slept all night.
June 15th, started cyclosporine (anti rejection drug) still on Chemo but oral now. Joe was very upset today gave him something to calm him down. This went on for the next 3 days. He was really upset and all he could say to me was were is my mummy she’s left me, then he told me his address and told me to take him home to his mummy, he had know idea who I was, it totally devastated me and I realised he had dementia , the doctors told me that was one of the symptoms of ALD, I just hugged and hugged him to see if he could touch my face and smell my hair like he did before but he just looked confused an scared . That was the last time he spoke I just felt so desperate and frightened. But when he was ever upset after that I was the only one who could calm him down, the nurses said he could sense me which gave me some comfort.
In between we had visitors, people would bring him teddies and toys and lots of get well cards, our room was covered in posters and get well wishes. It touched me so much knowing people loved him and were thinking about us.
June 19th TRANSPLANT DAY: 1.5 litres of Bone Marrow, Started at 4.30 pm and finished 10.30pm everything had gone well today. What an amazing lady for giving my son a chance.
June 20th: Joe had to be fed by tube now as he couldn’t keep anything down it was called TPN and about twenty drugs a day! He was in isolation now nobody could come inside the room except us and the nurses.
June 21st: Joes 6th Birthday: People came to see us today but they couldn’t come in the room they had to sing Happy Birthday through the intercom, Very sleepy today. The nurses painted there faces and made a cake for him they were brilliant!!!
June 23rd: Poorly day , sore throat , mouth and tummy ache all day started on 90 ml of morphine given to settle him. Slept until 3am up for 30 mins and settled him until 7 am.
June 24th: Very poorly today, puffy eyes, rash and nose bleeds, given 110ml of Morphine and his cocktail of 20 drugs . Hair falling out today so bought little silver box to put a bit of it in. His breathing has changed, very heavy.
June 25th: Very Poorly today swollen and puffy eyes, breathing really difficult, really feel helpless at the moment! Joe is given a nebulizer and calms down.
June 26th: Dr Vora & Dr Sharrad are happy with the Bone Marrow transplant but they feels it hasn’t helped Joe and maybe made him worse with the ALD, I was so frightened now we might have cured Joe like this, I felt so guilty for having these feelings! But he hasn’t spoken or made signs of improvement since we came here he is just getting worse everyday. The doctors stopped his Lorenzo’s oil as they didn’t think it was helping and there was a chance he could breath it in to his lungs.